Welcome to Camp Other’s Daily Kos Blog and Lyme Disease Awareness Month.
In recognition of Lyme Disease Awareness Month, Camp Other blog will begin posting special entries just for the Daily Kos audience, as well as cross-posting from the original Camp Other blog, found at http://campother.blogspot.com/.
A little bit of an introduction and backstory is in order, since my writings may not be familiar to a number of my readers at the Daily Kos:
I originally wasn’t going to blog about Lyme disease at all, and just silently struggle with my situation. What I initially started as a somewhat private rant became a blog on blogspot where I wrote in response to the Chicago Tribune’s article published last year, “Chronic Lyme: a dubious diagnosis”.
I wrote a five part deconstruction of the article and a post-mortem of it from the view of a skeptical reader who is neither for nor against the existence of chronic Lyme disease but is opinionated about what one reads, asks a lot of questions, and does some basic fact-finding. (Of the two entries, the post-mortem gets to the point right away.)
The skepticism demonstrated is partly my own sense of skepticism - but also a perspective which I hope the typical reader who is wholly unfamiliar with the issues around Lyme disease will take up in order to begin their own investigation into whether or not chronic Lyme disease is a valid diagnosis.
I am aware that there are a lot of skeptics who are set against the idea of chronic Lyme disease’s existence. And to disclose here: I have been a skeptic of many things throughout my life, and continue to be. But once I was bitten by a tick and began to show all the signs and symptoms of Lyme disease - I was a textbook case, even - and my symptoms persisted past an initial course of antibiotics... Well, as the title of Howard Zinn's autobiography has said, “You can’t be neutral on a moving train”.
That considered, I am probably still one of the more skeptical people with Lyme disease that you will meet online, even as I have suffered for years with persisting symptoms. I question everything, and I work to understand the issues surrounding Lyme disease from a social, scientific, political, (and at rare moments, personal) perspective.
And so, this is what I write about - more than my own personal history, more than my own suffering. And this disease (or tickborne disease complex, to be more precise) has caused a lot of suffering for me and has been a burden on those whom care about me the most.
This is one of the few times I will mention the personal cost of Lyme disease and tickborne illnesses to me and to those whom care about me.
My life has been turned completely upsidedown by tickborne disease in that:
- I have lost a good paying job due to increasing symptoms and calling in sick when there was no way I could have made it into the office;
- I’m many thousands of dollars in debt due to medical expenses and loans I could not pay off while ill and not working;
- I’ve had to repeatedly turn down and opt out of both professional and personal events I would have enjoyed and benefited from a lot - anything from going out for lunch, a convention, or even paid trips overseas;
- I’ve lost many nights’ worth of sleep due to being awake with severe pain and trips to the emergency room which were fruitless and debt inducing;
- I’ve lost many days, weeks, months (and now years) of what should have been the most productive years of my life - to doing anything I could to cope through the side-effects of different medications and the daily grind of doctor’s appointments, blood tests, and various invasive procedures;
- I’ve lost some friends along the way - friends who once enjoyed my formerly outgoing company and boundless enthusiasm for the great outdoors, world travel, and going out to nightclubs have had difficulty in watching me shrink in size from my former self.
To them, it is as if I became a different person. But I didn’t - I just had to adapt my life around the unpredictability, pain, and entrenched fatigue of my illness. I hope to return to my old life in some form when and if I get better. Hope.
It has not been an easy life. Yet like the symptoms which have persisted, I persist, too. I have continued to build a life worth living amid the ashes of my former self, and continue to have love in my life and friends who are present to me.
And I want to prevent everyone from having to experience the hell I’ve been through if at all possible. I want to learn what is known and unknown about this bacteria which has invaded my personal space and seemingly defied eviction. I want to know what I can do to encourage more independent research on tickborne infections and treatment for patients suffering from persistent symptoms - and not just vaccine and test development.
My writing at the Daily Kos during this month of awareness will be about Lyme disease facts - and perhaps written from a somewhat different lens from other people who have been touched by this disease. Expect some of what you may have known before - but also expect to read something new, too, including facts that have only just come to light recently.
Whatever perspective you have on tickborne diseases, I hope you enjoy reading this blog and that we have many interesting discussions in the weeks to come.
Salud.
